Every time my 18-year-old daughter leaves the house, I check where she is going, to work out if it’s safe for her to go.
This isn’t ‘just’ parental concern: Sophia has a medical condition which means she might suddenly pass out unconscious, perhaps for several minutes. Once she fell unconscious into a road; and, on another occasion, beside a railway track.
For a parent, it is the stuff of nightmares. Part of my mind is now always ready for the next phone call telling me Sophia has had another episode (she now has a smart watch programmed to call me automatically if she passes out).
I’ve had calls from railway station attendants, college teachers, air cadet leaders and strangers in the year since Sophia was diagnosed with dysautonomia, a condition that means her autonomic nervous system (which controls unconscious everyday functions such as heart rate, blood pressure and digestion) doesn’t work properly.
People with dysautonomia have trouble regulating these functions, causing a variety of symptoms.
Sophia (right) has a medical condition which means she might suddenly pass out unconscious, perhaps for several minutes
Sophia (right) has blacked out countless times and in ever scarier places. One of the most recent episodes occurred at around 11.30pm as she was walking to our home in Penrith, Cumbria
For Sophia, the list includes postural tachycardia syndrome (PoTS), a significantly raised heart rate when you stand up. Normally your heart rate rises on standing by ten to 15 beats per minute (bpm) — Sophia’s rises by 70 bpm, sometimes higher.
It’s not known what causes PoTS, but it can develop suddenly or gradually, and potential triggers include pregnancy, major surgery or a viral illness. It affects around 150,000 people in the UK and is most common in women aged 15 to 50.
Sophia’s list also includes vasovagal syncope (or fainting due to a sudden drop in blood pressure), orthostatic intolerance (which triggers symptoms such as palpitations, fatigue, light-headedness and chest pain when you move to standing from sitting, or stand for prolonged periods) and inappropriate sinus tachycardia (which means her heart rate rises even without exertion).
All this amounts to one thing: she could black out at any moment, without warning. At the time when others her age are discovering new freedoms, Sophia has had to stop driving lessons.
The first time she blacked out, in September 2021, was at a joint party for her 17th and her sister Elena’s 12th birthdays. One minute she was laughing with friends, the next she was unconscious on the ground.
Initially I thought it was a prank. But the shocked look on her friends’ faces and the amount of time Sophia was unconscious made it clear this was no joke. When she revived several minutes later, she couldn’t lift her arms or legs and kept screaming about a pain in her head — it was terrifying.
I called an ambulance, but by the time it arrived, 45 minutes later, Sophia was over the worst of it and her blood pressure, heart rate and temperature were normal, so she didn’t go to hospital.
Afterwards, we tried to rationalise it — was it perhaps a reaction to the excitement of the party? The party was good, I thought, but not that good.
Since then, Sophia has blacked out countless times and in ever scarier places. One of the most recent episodes occurred at around 11.30pm as she was walking to our home in Penrith, Cumbria, with her dad from the restaurant where he is a manager and Sophia works as a waitress. She blacked out and fell into the road. A kind stranger helped to manoeuvre her safely into a shop doorway, then waited until further help arrived.
‘I’m not being funny, mate, but she looks drunk, and you could be anybody,’ he told her dad.
It’s true. When she’s in the middle of an episode, she does look drunk — she becomes disorientated and her speech slurs.
While we’ve learned to deal with these episodes at home, keeping her lying down and drinking plenty of water until she starts to feel better, it’s heartening to know there are people who will look out for a young woman in trouble.
Last December, I got a phone call from an attendant at the train station near Sophia’s college in Kendal. Sophia had blacked out near the tracks on her way home, hitting her head, which is a major worry. Several passengers had stopped to help and an ambulance was called.
I am grateful for these extraordinary kindnesses but also acutely aware of how vulnerable Sophia’s condition makes her.
Our GP first mentioned PoTS to us following Sophia’s first faint — but it was 18 months before we got a formal diagnosis from a cardiologist at Lancaster Hospital. In fact, we were lucky; the charity PoTS UK estimates it takes an average of five to seven years to get the diagnosis — largely, they say, because many GPs are ‘unaware of PoTS’ and its symptoms.
Sophia has endured countless nights on a trolley in hospital corridors as doctors Google it.
There have even been accusations that she was making the whole thing up. I’ll never forget the paramedics who loaded her into the ambulance after a particularly gruelling episode in October 2022.
Sophia had fainted while sitting watching TV, and I called an ambulance because her eyes were rolling back in her head and she was gasping for breath. One of the paramedics took me aside to ask: ‘Has anyone told you this is all in her head?’ — because Sophia had predicted she would pass out when they stood her up.
I felt frustrated, because Sophia is one of the calmest, most level-headed teenage girls I’ve met.
But this kind of scepticism is not unusual. When we finally got an appointment with a specialist in January 2023, she told Sophia that she mustn’t hesitate to stick up for herself. ‘I often get emails from female patients who are being told their symptoms are all down to anxiety. Don’t listen,’ she said.
But none of this is easy at 18. Even when she’s not fainting, Sophia has to regularly endure constant chest pains, palpitations, tingling in her arms and legs, headaches, brain fog, fatigue.
Imagine experiencing all that and then having to defend yourself to a medical professional.
Yet we have received some incredible care from doctors who know about PoTS.
We finally received Sophia’s diagnosis in December 2022, just after she blacked out at the train station — the acute dangers she faced made me insist hospital doctors look more carefully at what was going on. She spent a week in hospital with her heart constantly monitored, which included several ‘positive active’ stand tests (where a doctor monitors the heart rate response from sitting to standing, looking for the characteristic drastic rise). The results came back positive for PoTS.
This was comforting because Sophia could no longer be accused of fabricating the whole thing and she was prescribed ivabradine, to reduce her heart rate rises.
We are still experimenting with dosage as the effect hasn’t been as marked as we’d hoped, but there are other medication options; a diagnosis means Sophia has access to them.
Sophia has also made friends with other sufferers through PoTS UK and social media.
They share their views on recommended therapies. They are keen on ‘front loading’ fluid — drinking a pint of water before standing; adding 2tsp of extra salt a day to food, plus little exercises such as tensing and relaxing the leg muscles regularly to avoid a surge in heart rate on standing.
They seem less keen on yoga, which is suggested as it can increase the body’s ability to tolerate changes in posture — frustrating for me as a yoga teacher.
Unsurprisingly, none of them seems keen on compression hosiery — thick black tights that grip from the toes to above the waist and compress the lower limbs, causing an increased blood flow to the heart from the veins in the legs, thus reducing the risk of fainting.
PoTS is a life-long, incurable condition (although symptoms do improve in some) and while we understand more of what to do when Sophia has an episode (letting her stay lying down after a faint for as long as it takes to feel better), it’s impossible not to worry.
She now has a medical emergency lanyard which explains her condition to strangers and the smart watch that calls me when she passes out. Meanwhile, I’m still working on getting her to wear those compression tights.
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